Friday, February 19, 2010

So, there it is. That's what all the fuss has been about the past week. =-) Kendi calls it her "button boo-boo." One thing that I want to mention, for parents that might be looking at a feeding tube in the future, is that I think we chose the more invasive route for Kendi's button placement. I didn't realize that it would be more invasive when we chose this route, and I don't know that I would choose this route again. Basically, there are two choices to have a g-tube placed.

Endoscopy: This is how it was done for Samren. The go in with an endoscope to place the tube. General anaesthesia is not required. A PEG tube is placed rather than a mickey button. The peg tube has a "bumper" on the outside of the body, as well as on the inside. The PEG tube must stay in 4-6 weeks so that everything can fuse/heal. After that, the GI can go back in via endoscope, cut the bumper off from the inside, and pull the PEG tube out. Then a mickey button can be used. No overnight stay in the hospital. Just the annoyance of a 12 (or so) inch tube hanging out of your child's body for 4-6 weeks until the mickey button can be placed.

Surgical: This is what we chose for Kendi. We chose this so that we could get it all done in one procedure rather than two, and so that we wouldn't have the inconvenience of a tube hanging out of Kendi's body for 4-6 weeks. What I didn't realize is that the surgeon had to make a 1.5 inch vertical incision into her body, and then also the whole for the mickey button. As a result, Kendi will have two scars rather than one. Also, she was in MUCH more pain than Samren was. She had to be put under general anaesthesia for the procedure, and was in the hospital for a day. The mickey button comes out much easier than a PEG tube (it is held in place with a balloon filled with water on the inside of her stomach) so we must be very careful this first month while the tube canal is healing.

It was really hard to see Kendi in so much pain. I think this is the #1 reason why I would go with the endoscopic placement if I had a do-over. Yes, it's nice to be done with the hospital, but nothing is worth making your baby go through more pain. I honestly didn't realize it would be that much more invasive. It has been 4 days since placement. I would say she's 75% back to herself. She still isn't talking as loudly as she did before, and she still doesn't trust it not to hurt when you pick her up to hold her (stomach to stomach). However, she doesn't wince anymore when we pick her up and she has to engage her abdominal muscles.

The actual usage of the tube is going great. The first day she didn't want to touch her "button boo-boo" but now she's to the point where she lifts her shirt for me to give her medicine. She says it "tickles" when the medicine goes in. Giving medicine is now a smiley occasion rather than the traumatic experience it was just two weeks ago. It takes about 60 seconds to give meds, rather than 20 minutes.

For those that are considering HIV adoption, I want to emphasize that MOST kids do not have to get a g-tube in order to take medicines. Some do. Kendi was one. It was the right choice for her. I don't want anybody to be discouraged from HIV adoption because of the chance that your child might need a g-tube. Honestly, it is no big deal in the long run. It will affect her life in pretty much no way, except to make medicines easier to take! After 2 weeks of no bathing, she can take bathes. She can swim during the summer (just cover the button with gauze before swimming). You do have to stay mindful that the button could be pulled out with rowdy play, or sliding off of couches and such. We have found the best way to take care of this is simply to always have the child wear a onsie underneath their clothes. The onsie fits tight and makes the button fairly secure even with rowdy plan and sliding off of furniture! Samren had a button for almost 3 years and it only came out once (when the balloon that keeps it in burst).

If anybody has any questions, feel free to ask. You can get more general information HERE.

2
comments:

Anita and others,Just so you know, there is a third way to have the gastrostomy done. Most surgeons who directly place the mickey button do NOT do it with the incision, they do it laparoscopically. Noah and Marcus both had it done by different surgeons and in different hospitals, but the same way. They each had three tiny tiny incisions (maybe 1/4 inch) and then of course the hole where the button is. There were no stitches or anything, just steristrips and the pain and recovery was minimal. I am sorry Kendi had to have it the more difficult way, and I hope her boo boo is all healed up really soon!!!

So sorry Kendi has had such a hard time! Thanks for sharing about the method they used. Sounds like I need to ask more questions when we have our surgical consult on Monday. As far as I understand, Miss A's surgery will be done by going down through her esophagus and the only incision is where the button is placed. They do plan to place a button right away. But, like the previous poster mentioned, the discomfort is supposed to be very minimal and they said she'll likely be back to normal the next day.

Oh, and thanks for mentioning the onesies. That was my plan too but I wasn't sure if they would work. Off to Wally-world in a little while to stock up!

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